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      Experiences of Patient-Led Surveillance, Including Patient-Performed Teledermoscopy, in the MEL-SELF Pilot Randomized Controlled Trial: Qualitative Interview Study

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          Abstract

          Background

          Current clinician-led melanoma surveillance models require frequent routinely scheduled clinic visits, with associated travel, cost, and time burden for patients. Patient-led surveillance is a new model of follow-up care that could reduce health care use such as clinic visits and medical procedures and their associated costs, increase access to care, and promote early diagnosis of a subsequent new melanoma after treatment of a primary melanoma. Understanding patient experiences may allow improvements in implementation.

          Objective

          This study aims to explore patients’ experiences and perceptions of patient-led surveillance during the 6 months of participation in the MEL-SELF pilot randomized controlled trial. Patient-led surveillance comprised regular skin self-examination, use of a mobile dermatoscope to image lesions of concern, and a smartphone app to track and send images to a teledermatologist for review, in addition to usual care.

          Methods

          Semistructured interviews were conducted with patients previously treated for melanoma localized to the skin in New South Wales, Australia, who were randomized to the patient-led surveillance (intervention group) in the trial. Thematic analysis was used to analyze the data with reference to the technology acceptance model.

          Results

          We interviewed 20 patients (n=8, 40% women and n=12, 60% men; median age 62 years). Patients who were more adherent experienced benefits such as increased awareness of their skin and improved skin self-examination practice, early detection of melanomas, and opportunities to be proactive in managing their clinical follow-up. Most participants experienced difficulty in obtaining clear images and technical problems with the app. These barriers were overcome or persevered by participants with previous experience with digital technology and with effective help from a skin check partner (such as a spouse, sibling, or friend). Having too many or too few moles decreased perceived usefulness.

          Conclusions

          Patients with melanoma are receptive to and experience benefits from patient-led surveillance using teledermoscopy. Increased provision of training and technical support to patients and their skin check partners may help to realize the full potential benefits of this new model of melanoma surveillance.

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          Most cited references46

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          Perceived Usefulness, Perceived Ease of Use, and User Acceptance of Information Technology

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            Standards for reporting qualitative research: a synthesis of recommendations.

            Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.
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              Using the framework method for the analysis of qualitative data in multi-disciplinary health research

              Background The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations. Discussion The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study. Summary Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research.
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                Author and article information

                Contributors
                Journal
                JMIR Dermatol
                JMIR Dermatol
                JDERM
                JMIR Dermatology
                JMIR Publications (Toronto, Canada )
                2562-0959
                Jul-Sep 2022
                1 July 2022
                : 5
                : 3
                : e35916
                Affiliations
                [1 ] Sydney School of Public Health University of Sydney Sydney Australia
                [2 ] Centre for Cancer Research and Department of General Practice University of Melbourne Melbourne Australia
                [3 ] Centre for Health Services Research University of Queensland Brisbane Australia
                [4 ] Cancer Voices NSW Sydney Australia
                [5 ] NHMRC Clinical Trials Centre The University of Sydney Sydney Australia
                [6 ] The Daffodil Centre The University of Sydney Cancer Council NSW Sydney Australia
                [7 ] Melanoma Institute Australia The University of Sydney Sydney Australia
                Author notes
                Corresponding Author: Katy L J Bell katy.bell@ 123456sydney.edu.au
                Author information
                https://orcid.org/0000-0003-2893-5863
                https://orcid.org/0000-0002-5438-2986
                https://orcid.org/0000-0002-1728-8085
                https://orcid.org/0000-0001-5225-6639
                https://orcid.org/0000-0002-4089-7823
                https://orcid.org/0000-0001-8962-946X
                https://orcid.org/0000-0003-4297-1967
                https://orcid.org/0000-0001-7834-0572
                https://orcid.org/0000-0001-6714-9633
                https://orcid.org/0000-0002-5331-6370
                https://orcid.org/0000-0002-2900-2611
                https://orcid.org/0000-0002-7163-9755
                https://orcid.org/0000-0002-0137-3218
                Article
                v5i3e35916
                10.2196/35916
                10334928
                7ad6a556-0a2b-446c-a3d4-f77b2737c455
                ©Dorothy Drabarek, Emily Habgood, Monika Janda, Jolyn Hersch, Deonna Ackermann, Don Low, Cynthia Low, Rachael L Morton, Mbathio Dieng, Anne E Cust, Adelaide Morgan, Elloise Smith, Katy L J Bell. Originally published in JMIR Dermatology (http://derma.jmir.org), 01.07.2022.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Dermatology Research, is properly cited. The complete bibliographic information, a link to the original publication on http://derma.jmir.org, as well as this copyright and license information must be included.

                History
                : 23 December 2021
                : 26 January 2022
                : 5 April 2022
                : 18 April 2022
                Categories
                Original Paper
                Original Paper

                melanoma,self-surveillance,digital technologies,teledermoscopy,teledermatology,mhealth,mobile phone

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